This post is sponsored by Prudential Financial and BlogLovin
One of the most consistent comments I get is how happy and full of joy I always seem. What most people don’t realize is behind that sense of happiness is also a deep pain and sadness over the greatest loss of my life. While I’ve always been a generally happy, optimistic, and full-of-life person, I recently went through a devastating experience which I almost let rob me of all my happiness. Eventually I learned that happiness is sometimes even stronger when it has been tested and I need to embrace the spot of darkness to further my light, rather than dim it. I really can’t take credit for any of the lessons I’ve learned. All my inspiration comes from my mom and the way she lived her life. Join me as I dig deep to share my story of love, loss, inspiration, and strength.
the diagnosis & loss
New Year’s Eve was always my mom’s favorite holiday. She loved how it symbolized a new year ahead, full of fresh starts and the promise of upcoming adventures. She also loved any excuse to dance into the early morning hours and would use the holiday as a way to force our family into dancing with her. I never needed any convincing. I loved how free and happy my mom looked when she danced. Her whole soul seemed to come alive.
When my mom was diagnosed with amyotrophic lateral sclerosis {ALS}, New Year’s became a way for me to track how many years she had beat the disease for. We got 5 of them in all. Each one came with their own challenges as the disease slowly progressed.
Year 1
The early stages of the diagnosis. The doctors were still trying to figure out what it was and we were hopeful it wasn’t ALS. Just a little bit of stumbling that seemed like clumsiness, but my mom could still dance her heart out. This was probably the last “normal” New Year’s Eve we’d have. Over the course of the year, the stumbling increased and my mom developed greater weakness in her legs. I would help her into bed at night because she couldn’t get in on her own anymore.
Year 2:
My mom now walked with a cane, but she wouldn’t let anything slow her down. Even with that cane, she still danced and she was still the most beautiful dancer in the room. I remember thinking, “I should record this, just in case”, but then thought what a morbid thought to have and didn’t record it. This was the year she had to stop driving and the loss of that independence was a big blow to her. Over the course of the year, the cane was traded in for a wheelchair.
Year 3:
I don’t have a photo from this year, here is one of my favorite photos of my mom and I during her illness.
No more dancing, as mom couldn’t walk at all anymore and was confined to a wheelchair all the time. She also began having difficulty using her fingers and arms. She couldn’t lift her arms independently and so she couldn’t dance from her wheelchair either. We dreaded this year, worried what we would do now that there was no dancing. We bought a karaoke machine and hoped that would provide entertainment and distraction from what was now our new normal. This year probably brought some of the biggest challenges. She started having difficulties with swallowing and so the foods she was able to eat started to become limited.
Year 4:
By the time we made it to this New Year’s my mom was no longer able to eat at all. She was now using a feeding tube. In addition, she was no longer able to speak. My mom now used a computer and would “type” using her eyes to communicate. Bye bye dancing. Bye bye karaoke machine. We decided to start having theme parties. We kicked off the tradition with a 20’s theme. I could tell my mom still really wanted music and still really wished she could dance. I would raise her arms up slightly and hold them as I “danced” with her. This was the new way we could dance together.
Year 5:
Increased difficulty with swallowing. We would use a suction to clear out the saliva in her mouth. She was also beginning to have difficulties with breathing. This year we did a winter wonderland theme. I continued to “dance” with her in our new way, being careful not to overdo it and put too much pressure on her weak muscles. When I asked her, “what’s your New Year’s resolution?”, she responded, “to be happy”. I was never sure why she chose that resolution when happiness seemed to come effortlessly to my mom, but she always deemed it as the most important thing in life, even more important than health.
The last year of my mom’s life was bittersweet. I had just gotten engaged to Bassam and there were so many fun events and plans to focus on. I tried to involve my mom as much as possible in the wedding planning process, even though she couldn’t fully participate. I Skyped her in when I went shopping for my wedding dress. I spent hours trying to find the perfect dress for her that would satisfy her love for fashion and we would be able to put on her (you’d be surprised how hard it is to dress someone who cannot move in the slightest and how limited black tie dresses are for this). We had the wedding at home to make it as comfortable as possible for her and I spent hours by her side showing her what I was planning. She took such pleasure from looking at my flower arrangements, colors, and other details. Throughout all of this, she was in great pain. Her body was stiff and uncomfortable from always being the same position and never being able to move. She choked on her saliva frequently because she couldn’t swallow. She couldn’t always breathe. There were many nights where I stayed up all night by her side. She was unable to sleep because she was in so much pain or she would be choking throughout the night. Despite everything I’ve described, I never really knew the depths of her suffering. She always maintained a smile and a brave spirit because she didn’t want anything to take away from my happiness and excitement for the wedding.
Two weeks after the wedding and the day after my birthday, my mom passed away. She had waited until all of my events were over so that she could be there for everything. And then she left this earth, with a smile on her face as always.
No matter what ALS took away from my mom, the one thing it could not take was her love for life and her positive attitude.
No matter how her life and her abilities changed from year-to-year, no matter what she had to give up, her beautiful smile never left her face, even in the last year when it became difficult for her to control her mouth movements.
the grieving period
I remember thinking, even in the early days of her passing, “how on earth are we going to celebrate New Year’s Eve without her?” While New Year’s Eve did prove to be the hardest holiday to cope with, every single day was extremely difficult. My mom had always been my best friend. Losing her had always been my greatest fear. I didn’t know how I was supposed to live a life that didn’t include her in it. How I was supposed to go about my day like normal when the most important person to me couldn’t be a part of it. My mom and I had a saying that we would say to each other, “you are the every minute of my every day”. I just didn’t know how to go on without her.
And so I didn’t really. I withdrew from life. My honeymoon phase with Bassam was over just as quickly as it had started. I took solace in the safety of my couch, where it seemed nothing bad could happen. I medicated myself with comfort foods and mindless television. I didn’t want to have new experiences because it was too painful to not be able to tell her about them. I stopped being an active participant in my life.
I often felt so selfish for being upset at my mom’s death. She looked so happy and at peace when she passed. I knew that she was now in a much better place and could finally be free from the horrible disease which had tortured her and trapped her in her own body for over 5 years. I knew I should be happy that she no longer suffered, but I wanted her to still be alive for me. I couldn’t live without her.
More than my grief over her loss, I also went through intense grief over everything she had suffered. During her illness, I never allowed myself time to process or grieve what was happening. Every day my mission was to make sure I was being as strong as possible for her. To make sure I was providing her with entertainment and I was taking care of her as best as I could. When she cried or had rough days, I didn’t cry along with her. I absorbed all of her pain and did my best to try to cheer her up. I was in survival mode. After she passed, all of that sense of strength and purpose faded. She wasn’t there for me to be strong for anymore. I finally gave in to everything I had swept aside for the past 5 years.
I tortured myself over everything she went through. I thought repetitively about how she must have felt and how scary it must have been. I obsessed about all the things I didn’t do for her or the time I didn’t spend with her. The past 5 years replayed in my head over-and-over like a DVD on repeat. Anytime I did anything enjoyable, like take a dance class, I would burst into tears because I’d think about how she couldn’t do that anymore and how she couldn’t do it for so many years. Anytime I had a happy moment or felt pleasure with something, I would immediately feel sad and cry because I felt so horrible to be able to feel happiness.
I did not live the life she would’ve wanted me to live. I did not allow her strength and positive outlook to be her legacy and the inspiration for my life. I just gave up.
inspiration and strength
Right before the first year anniversary of my mom’s passing, Bassam and I went on a two week trip to Costa Rica to celebrate our first wedding anniversary. We took surfing classes, ate freshly caught fish, went on hikes in the jungle, went water rafting, zip lining, and so much more. I have always loved travel and adventures and felt more alive than I had in a long time. It was during this trip that I really realized how much I had not been living for the past year. I also started to realize how much of a disservice I was doing to my mom’s legacy. She was a person who was always so full of life. She danced every single chance she got, she could turn any little event into a party, and she lived with so much joy every single day- even during the darkest days of her illness. For me to hide away from life was the exact opposite of what she would want for me. I decided it was time for me to start remembering how much I loved life and to live my every day to the fullest. I also couldn’t help but think about all the things my mom didn’t get to do in her life that she was planning on doing later on- except that later on never came thanks to the unexpected arrival of ALS. I realized I needed to make sure I was living all my dreams now instead of putting them off for another time and maybe never seeing them realized.
What I love and have always loved is travel. My bucket list of places I want to go in the world is never ending. My other passion is writing and sharing my experiences with others. I decided to combine the two by starting a couple’s lifestyle and travel blog with Bassam. It would give us a reason to travel and would give me a way to express my creativity. I wanted the main theme of the blog to be finding adventure in everyday life. I recognized that travel wasn’t something we could do all the time and I wanted to make sure we living every single day to the fullest no matter what we were doing or how “boring” that day was. I figured that if we were sharing these ideas with the internet world, it would hold us accountable to finding the joy and adventure in every day. This seemed to be a way that I could honor my mom’s love for life and also start getting me back to living again.
Since this is real life and not a fairy tale, I want to be every straight forward in sharing that this didn’t work right away. We did start doing more fun things like going for a walk after work or going on weekend getaways, but it wasn’t like I just snapped out of my grief and went back to being happy and positive all the time again. It was a long journey and one that I am still on. The difference with the blog was that when I had days that I just wanted to hide out on the couch, I had to get out and do something so that we could create content. There were many times that I still felt so guilty about being able to do something my mom couldn’t do during her illness or guilty that I felt happy. There were so many occasions where I cried instead of had fun and many times that me and Bassam fought over nothing just because I was still dealing with my grief that he couldn’t understand and I didn’t know how to share. I recently asked him how he felt during this time and he said he felt lost because he didn’t know how to make me feel better. He had never experienced losing a loved one and wasn’t sure what to do or what to say. Sometimes he felt it was best to just leave me alone and other times he thought it was best to distract me, but he always felt like he was doing the wrong thing. He felt as though it caused a drift between us because I was going through something so big that he couldn’t really be a part of.
I’m finally now getting to the point that when I feel like dancing I do it and instead of feeling sad that my mom couldn’t for so long, I think how happy she must be to be watching me dance. I’m also finally getting to the point where I no longer put things off. I recognize how short life is and what unexpected curve balls can come your way. When there’s something I want to do, I figure out a way to make it happen, instead of focusing on the reasons why it can’t. Finally, I’m learning to appreciate and feel grateful for all the things my healthy body can do for me that my mom couldn’t do, such as allowing me to take long walks, drive, lift up items, eat my favorite foods, change positions when I’m uncomfortable, and so much more. It’s been a really long road feeling appreciative instead of guilty for these things and I think my mom would be proud.
Turning my grief into a source of inspiration is a journey I’m still on. I don’t think losing a loved one is ever something that you get over, more like it’s something you learn to live with. There’s not a day that goes by that I don’t miss my mom with all my heart and wish that she was here. There are still plenty of times that a memory will trigger tears or I’ll be devastated thinking of something that I can’t share with her. The difference is, I’m learning that I can feel that way and I can also live life with enthusiasm and be happy. There is space in my heart and my mind for both. Life and feelings are complex and messy. Grief is not black-and-white.
Although I’m still learning and growing, here are some tips I’ve learned on turning grief into a source of inspiration:
1. The experience is different for everyone
Every single person will have their own experience when it comes to grief. Don’t feel like there’s a right or wrong way to grieve. You might even feel completely different from one day to the next. Take each day as it comes and deal with it accordingly. There is no right or wrong.
2. Time doesn’t heal, but it does help
As I mentioned earlier, I don’t think grief from losing a loved one is ever something you fully recover from. When you truly love someone, not even death can take that away. So while time doesn’t heal all wounds, it does help the sting of the wound fade a bit and eventually that wound turns into a scar. It’ll always be there, but you learn to live with it.
3. Throw yourself into a hobby
Starting this blog was the best thing that could have ever happened to me. I spent hours working on a project that I felt passionate about and it gave me energy and excitement for life again. This isn’t something that happened right away, but the repeated act of working on something that I loved and felt excited by eventually helped me to regain my love for life again.
4. Be kind to yourself
There isn’t a manual for how to deal with grief and there isn’t a timeline. I remember thinking by my mom’s one year anniversary I had to feel better. When the anniversary passed and I felt just as sad as I did before, I was so hard on myself. Don’t give yourself a timeline on when you need to feel better by. It’ll happen when it happens and it’ll probably take much longer than you expect. Take care of yourself. Work out. Eat good foods. Get plenty of rest. I know it’s easier said than done, but try your best to prioritize these things.
5. Know when to push yourself
That being said, know when to push yourself. It’s okay to give yourself time to wallow in your grief, it’s okay to sleep in, to skip out on social events, to hide away from life for a little bit. But know when it’s also time to stop. When it’s time to force yourself to get out there again, to wake up in the morning and do something you love, to go for a workout. There will be time periods where you may really need to withdraw from the world to cope, but eventually that can just become a habit. {You can read more about this here}
6. Do something to commemorate your loved one’s memory
The best thing you can ever do for your loved one is to move forward with living a life you love. Do something that’s important to you as a way to commemorate your loved one’s memory. It can be as big as starting a business or getting a degree or as small as dancing every time you get the urge. Every single time I dance or donate to charity, I do it in honor of my mom.
7. Accept feelings of sadness
Recognize that it’s okay to feel sad. It’s normal and expected. When you feel sad, let yourself feel sad. Don’t try to push the feeling away or pretend you’re happy. Then, go and do something you love. It may help cheer you up and it may not. That’s the not the point. The point is just to continue to move forward towards your values. Eventually in the long run, it will help.
8. Only you can get yourself through this
While it does help to have others to turn to and having a support system is crucial, only you can really get yourself to a point of inspiration and strength. That’s because only you know how you are feeling; no matter how much others can empathize, they cannot truly understand. Strength has to come from within. Work on fostering your relationship with yourself and working on ways to build your strength, rather than always relying on others to cheer you up. Figure out what is therapeutic and strengthening to you. For me, it is travel and blogging. For others it may be through dance, working out, journaling, or maybe even seeing a therapist.
Dear mom: you always said that I reminded you of a butterfly because I am always so happy, colorful, and full of life. What you saw in me was really a reflection of you. I was all those things because I was emulating my favorite person in the world- you. To honor your memory I’m living my life with yours as inspiration. I will smile, I will dance, I will find the adventure in everyday, and I will think of you. You are the every minute of my every day and I love you with all my heart. ~Your butterfly, Lena
Thank you to Prudential for encouraging me to share my story. I highly recommend you check out Prudential’s Masterpiece of Love series, where stories of love and loss become a source of inspiration and strength.
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Your post made me cry because I lost a loved one also! But it also inspired me to believe there is a light at the end of this deep, dark tunnel. Thank you for sharing your heart and soul.
Oh Serenity, I am so sorry to hear you lost a loved one. That is one of the most difficult things to go through. I am so happy to hear my post made you believe there is a light at the end of the tunnel. Sending you lots and lots of love and I’m here if you’d ever like to talk. Thank you so much for leaving this comment.
Thanks for sharing this, Lena. One of the reasons I keep reading your blog is your authenticity, which really shines through in posts like this. Grief is a long process and I think everyone deals with it in their own way – comparisons don’t do any good here, I think. Glad that your blog has helped you so much! Once again reminded that life is short and we can’t possibly ever be prepared for the curveballs it throws at us.
Oh Michelle, thank you for such a sweet comment. It’s really important to me to be authentic on this platform, so I am really happy that it shows through. I agree, the biggest takeaway I’ve gotten from all this is that life is so precious and short. We have to make the most of it, as cliche as that sounds. Thank you for always being so wonderful and supportive. I am so grateful that my blog has introduced me to people like you.
You have always been such a beautiful person and reading this, I am so inspired by you!!!! Love your article- and believe you shouldn’t limit it, but extend it into a book!!!!! You are an inspiration and many people could learn from you!!!
Aw thank you, Rani. That is actually a fantastic idea and I may take it into consideration. It might be a great way to honor my mom.
This is so lovely Lena. I’m glad you’re at a point now where you can reflect and look back on your mum’s life and your memories of her and cherish the special times without always being burdened with the greif. After all, she was a lot more than her disease and her life a lot longer than the time she suffered, so it’s not a disservice to her to remember her spirit rather than her illness. xo Laura
Thank you for your kind comment, Laura. You are so right, she is so much more than her diagnosis and I always try to remember her as she was before. She had such a powerful spirit and I will try to live my life half as good hearted as her. Thank you again.
Such an inspirational tribute to your mother! I bet she would be happy seeing you dance in her memory!
Aw thank you so much, Julia!
Lena, this is so beautiful. Thank you so much for sharing. You are such a beautiful person inside and out. I’m sure your mom is happy to know that you are dancing at every moment’s chance and living your life to the fullest.
Aw thank you so much, Julie. I cannot tell you how much I appreciate your kind words. I do truly hope my mom is happy watching me.
Lena, I have no words. You are just such a strong, special and real person. Truly an inspiration. This must have been hard to write about but it i so real, it’s what everyone should be doing. Thank you for letting us get to know you deeper. Wishing you the most happiness out of life.
Aw Shayan thank you! That is so sweet and made my day. It’s really important for me to be real on this platform and I’m so glad when people say it shows. Thank you for your kind comment. It was so hard to write but getting comments like yours make me realize it was important to do.
This is so beautiful Lena. I sincerely hope no one walks into my office as I cry. My grandfather recently passed away just 3 days after our wedding, I couldn’t even process the information even though it was a long time coming and he lived 93 beautiful years. It’s so hard to lose a love one and I have so much respect for you in sharing your story and experience, I know your Mom is so incredibly proud of you and what a beautiful heartfelt tribute.
Aw Staci, I am so sorry to hear about your loss. Although it’s never easy, it is especially hard when it’s before or right after an important occasion. I am so glad your grandfather was able to see you get married and I’m sure that meant the world to him. I do feel like that’s part of the reason why my mom finally felt okay to let go. Let me know if you ever want to talk. I know this is such a difficult time and so bittersweet with having just gotten married.
Lena, I am so very sorry for your loss, as you noticed on my blog we both lost mothers to ALS and reading your story flooded my mind with so many memories. Thank you for sharing such a raw and real story and for helping others see the light. I know living out my mother in law’s legacy has provided so much healing to our family. Much love!!
Thank you for your kind comment, Amber. I’m so sorry for what you and your family have been through; ALS is such a horrible disease to experience or watch someone experience. I loved the lessons you outlined in your beautiful post. They resonated so much with me. Wishing your family lots of love, adventures, health, and happiness.
This really hit home today. We lost our son (47) this past Feb to malignant brain tumor which he had battled on & off 3 times for 9 yrs but this last year was spent in hospitals & nursing home. He lived/worked with us so it hurt losing him even more I feel. My other son had a picture pop up on his phone of Brian goofing off for a past Halloween and it has really set off the water works.
The family had been really busy this spring with the grandkids summer activities and selling my mother’s house and cleaning it out but now our activities are done and the long winter months are here along with all the holidays and reminders of our loss. I know I need to find more to keep me occupied as I am retired with loose ends. Your post has helped me see that. Thank you. I need to find a focus and also to lead my husband if possible. Grief is so so hard.
Oh, Linda. I am so sorry for your loss. My heart truly aches for you. I know how much I have suffered losing my mom, I cannot imagine how much more difficult it must be to lose a child. The holidays are always such a difficult time, even the ones that seem insignificant like Halloween. There are just so many memories attached to them. I know for myself I have to actively work at giving myself grace during this time as I tend to be sadder than I expect to be and then feel down on myself for not being able to enjoy the holidays or be “happy enough” for those around me. I know I dreaded the first holiday season so much and so my heart goes out to you. I wish you and your family all the best this holiday season and always. I am thinking of you and sending you lots of love. If you’d ever like someone to talk to, I’m just an email away: [email protected]
I am so sorry for your loss and I love the way you turned your sorrows into a inspirational way. You are so inspiring and powerful
All my love,
Happywifeyhappylifey.com
Aw thank you, Nichole. That is so sweet of you and thank you for reading.
Thank you so much for sharing your story, because it’s so close to what I’m going through right now. My dad was diagnosed with MND (ALS) 3.5 years ago and is now in a wheelchair with little use of his arms and legs. I’ve been grieving for him throughout this time to varying degrees, it’s such a terrible disease to see him suffering through. I started my blog for similar reasons to you (needing a creative outlet, wanting to focus on the positives now, because he’ll never get to do all the things him and my mom planned for their retirement). I’m trying to stay positive because I know I’m lucky that he’s still with us but equally it’s extremely upsetting to know the inevitable will happen sooner or later…
I’m so sorry for your loss but really appreciate the honesty of your post. I hope every day gets a little bit lighter for you x
Joannda
azestfortravel.com
Oh Joannda, I’m so sorry to hear that you and your family are going through this experience. It’s absolutely devastating and I think the worst disease anyone can go through. Your comment gave me chills and I’ll be praying for your family and sending you lots of love. I know what you mean about wanting to focus on the positives. What you said about your mom and dad not being able to do the things they planned for their retirement is exactly what pushes me everyday to do the things I love and not put things off for the future. I know it’s difficult, but your best to enjoy the time you have with him. You never know what may happen and what his experience will be. I know it’s extremely rare but there are people who can live with it long term. If that’s something your dad wants, I hope that he’s one of those! Have you heard of Catherine Scott? I follow her on Facebook. She’s had ALS for years and I find her extremely inspirational. Please let me know if you’d ever like to talk. I’m always here. <3
This piece is beautiful. Thank you for writing it and sharing with the world, because I’m a complete stranger who stumbled across this on the internet and it really touched me. Thank you for sharing it. Just thank you and I wish you lots of strength and happiness and love.
Hi Emily. Thank you so much stopping by, reading, and leaving a comment. I truly appreciate it. I’m so glad to know the piece touched you and I’m wishing you lots of love and strength with whatever it is you’re going through. xoxo
What a blessing this post is. My mom passed 4 days ago and struggled with an autoimmune diseases for 3 years. She lost her capabilities to walk and do the things we loved to do together. Through it all she was still my light and an incredible mom. Every day has been hard and you’ve given me comfort in beginning this journey.
Oh Brandon. I’m so sorry for your loss. I remember those beginning days all too well and my heart hurts for your grief. I’m so sorry to hear how your mom struggled. Wishing you lots of light and love as you go on this journey of grieving not only her struggling, but also her loss. I’m here anytime if you’d like someone to talk to, just email me or send a direct message on instagram.