As I fast approach the anniversary of the beginning of transplant, a.k.a. the day I got my tri-catheter port surgically inserted into my chest, it’s natural to reflect on the last year including my medical ups and downs, living with chronic illness, and enduring medical trial and error. The first question I receive from individuals outside of my intimate circle is: So… did it work? There are of course variances to this like “did it help?” or my least favorite and unoriginal question, “so how are you feeling?”
I know I’m an exacting person. My currency is words therefor I assume everyone is as specific with their word choice as I am. It’s an unrealistic standard to hold people to. But still, as I am asked if the transplant worked, if I feel different, if I’m better, if I’m cured, I am able to both ponder these frequent and repetitive questions and hone my response.
The bottom line is that I will never know how my MS would have progressed without the transplant. I will never know how my walking and stability would have further deteriorated or if they would have stabilized. I can’t see the damaging effects of the brutal treatment I endured. Is there something worse in my future? Chemotherapy is a cruel drug and while necessary, it’s ignorant to assume there aren’t residual effects on my body. Where would I be now had I never had shingles in February? I don’t know.
Here’s the better question: Would I do it again? Unequivocally, yes.
For those living with MS, we have our own language. We learn the language of symptoms and feelings. Over time, we can articulate the differences — for us — in an odd sensation, a fleeting or intermittent pain, or a constant and ruinous new issue. The loud voice of our body becomes a constant companion that the average healthy individual tends to ignore. We listen, we fixate, we obsess and we wait for the next message. We walk the line of when to ask our medical team for their opinion on bodily sensations they’ve read about, yet never experienced. When do we raise our hand for attention, call the doctor, make an urgent appointment? When do we suffer in silence, endure as if life is normal, will it to stop in the name of not appearing too needy, dramatic, or a troublesome patient? I take that knowledge and experience into my reflection of my life, my body post transplant, and the last year of treatment and recovery.
The transplant improved odd things like my heat intolerance (better) and night sweats (gone). My bladder and bowel anxiety induced urgency is severely reduced. Fatigue — that unwelcome and devastating companion — is gone. Now I’m tired from physical exertion, not just because it’s Tuesday. It’s like the sand bags ever-present in my bones, were removed. But I still walk with a rollator. Rather than be ashamed of this fact, I’ve learned to appreciate my mobility devices and their ability to keep me mobile. I’m living independently, having dinner parties, traveling again, meeting new people, you know, living my life. I refuse to let illness and disability define me. I reject the premise that I am less than because I look different.
I also believe the narrative that I’m ok for now. Post transplant I do not require drugs or disease modifying therapies. I’ve been on many in the last 10 years so to be drug free is incredible! We’ve erased the bad code in my immune system. Now my efforts of healing and rebuilding will have greater impact because I’m not treading water and fighting battles on multiple fronts. I have had impossibly low lows in the last year. I’ve also experienced awe and wonder in my body and its perseverance and resiliency. I’ve let go of a lot of emotional garbage related to my worth.
While I don’t recommend a bone marrow transplant and divorce at the same time, I am actually grateful that one brought on the other. I am rid of unnecessary and constant relationship stress, not to mention the drudgery of unending disappointment and toxicity living with an unhelpful and absent partner. My friendships were strengthened and people showed up shining a bright light on the goodness, love, and support in my life. I’m impressed by humanity, not discouraged.
I’ve learned more about myself than I could have predicted. I can clearly recollect the days following transplant and how I didn’t think I could make it. I didn’t know how I could keep living in the midst of so much suffering, confusion, and fear. As an impossibly independent woman, I released into help as nurses held me, moved my legs, bathed me, and kept me alive. Each time I was paralyzed, I learned and reinforced, that I can learn to walk again. I can get stronger, the effort is worth it. I’ve also learned that mental health is not to be ignored. I cried, screamed, and broke down in therapy sessions over the relationship trauma of my divorce and the medical trauma of the last year.
Grief and healing are nonlinear. But they can exist together. The only way to the other side is through. When my medical team said this would be difficult, I couldn’t comprehend the enormity of that word. In hindsight, “difficult” doesn’t even begin to cover it.
Through tears of defeat and tears of joy, body degradation and elation, and one million new experiences, I’m happy, I’m content, I’ve found a small amount of peace. The future is full of possibility.
You can click here to catch up on the whole crazy journey.
3 responses to “So did the transplant work?”
Thanks for all the pictures! I so admire your resilience, your writing, and your hairdo in the last picture! Keep it up, Carolyn! Your Canton prayer warriors and I are!
I’m so grateful, Beverly.
Every time I read your posts waves of deep emotion surge through my body. I look forward to reading about your journey. I am inspired and hopeful.