“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” – Thich Nhat Hanh
(2009)
“My name is Tommy. My wife has multiple sclerosis. She hit her head and fell. She’s unconscious. No, I don’t know all of her medications. There’s just so many. Okay. Yes, I’ll just bring them all.”
The ambulance response time was only minutes later.
They arrived and carted me off to the nearest hospital. In the ambulance I was groggy due to my blood pressure taking a dive. I had fallen in the bathroom and Tommy could not wake me. He thought that I had hit my head but they found no trauma to my head. Soon after arriving at the hospital, I was awake and coherent. They only had to give me fluids.
At the hospital my good friend, Kisha, was the first to arrive followed by Tommy. Tommy later told me that he had followed the ambulance but when we got to the hospital he sat in the car and cried before coming in so he could appear strong for me. It worked because I had no idea and his exterior did indeed display his usual nonchalant and always calm look.
We sat in the ER like the three amigos, laughing and joking. I had no clue I was about to be admitted and not leave the hospital and rehab until nearly one month later.
After I received the fluids, I still felt bad, so the doctors recommended that I stayed over night in the hospital for observation. During that time I must have had an exacerbation because by morning I could barely move and I could only muster up a whisper when I talked.
I was in the hospital in Silver Spring, MD, for a week. My parents joined me from Louisiana. Then I was taken by ambulance to an inpatient acute rehab farther north in Germantown, MD. Once I made it there and my mother and father saw I was in good hands, they returned to their lives and jobs in Louisiana. I cried like the baby I felt I had become. I was there three weeks. I spent my days among mostly elderly people who immediately befriended me. That’s where I really learned that disability has no face, age, race or sex.
I was kept on a strict schedule. I did physical therapy three hours per day. I was taught how to live in a wheelchair: cook, clean and get dressed. Often I was too exhausted to weep but by the end of the day I always found a way to get a little cry in.
And then there were the humbling shower experiences. I was a fall risk so I had to attain special permission to take a shower. They deemed I required an occupational therapist near the stall with me. She watched me as I struggled to clean myself. I also needed help from the nurse’s aide who took her time and lined my panties with the required sanitary napkins. Yes. My monthly visitor was in town. Those evenings, the tears were of pure gratitude for the help.
While I was in rehab, I had a lot of time to think. I realized this MS exacerbation had carved yet another turning point in the course of my life. I was mourning the loss of who I used to be. Though I missed many of the daily activities I use to take for granted, I have to accept, adapt, and keep moving forward. That’s all I can do. I’m learning to continually adjust to new norms. Some adjustments are smoother than others. Some ransack my life like Hurricane Katrina ransacked New Orleans. This exacerbation started months before while I was still working. I only had a limp that progressed to less mobility and put me in a wheelchair (that I still use). Within weeks, I couldn’t perform my job responsibilities. I guess that’s what they mean by chronic progressive debilitating disease.
After a few days of being in rehab, the only thing I looked forward to was visitor hours. Tommy came everyday after work and would eat dinner with me. And on the weekends he would stay until they told him it was time to go.
When it was time for me to be discharged from the rehab, I had made little progress in my quest to get better but because of insurance restrictions I was told it was time for me to go home.
My husband picked me up and said, “My mom’s coming out here.” Silence, this time from me.
I asked, “Why?” I sincerely wanted to know. Denial had been my constant companion for months.
“To take care of you!” he explained.
My tears were now circling and threatening to pounce. I didn’t say anything because I knew that saying thank you would never be enough.
I’m not a regular reader but when I take the time all I can say is ‘that’s me, I’m truly not alone’ and I cry; than Get up and do whatever it is I need to do than I can do. Thanks for putting my experience in words for the whole world to see and specially my friends, & family,
Thanks a ton and continue the wonder writing.
Pray. Accept. Pray.
Pray. Adapt. Pray.
Be grateful. And, Don’t Stop Living While We Are Living!
I have spent the last couple of hours reading your material Nicole! I have truly enjoyed it. It is so interesting to see how similar MS is for many of us. At the same time it is very different. In either case, it is a force to be reckoned with.
I love how you chronicle the journey so many similarities…I have skipped doses of Copaxone its horrible I know but do you feel as if missing shots could contribute to exacerbations? I ask the med nurse and they don’t have a comment either way.Thoughts? I am reading your site from left to right like a book-kudos!!!
April, It certainly doesn’t help!I take Tech…
Nicole,
I dont know how i stumbled across your blog – i was researching support groups in New Orleans and trying to find some connection to anyone else who is going through what i am now going through. I found your blog and started to read your story. I am currently living in New Orleans, I am 25 and I just finished my first year of nursing school. Through months of my first clinicals i was dealing with the stress of school but also with the stress of knowing that there was something very very wrong going on with my body. As it happens despit the fatigue, anxiety, pain, depression and all the excetera that goes along with this disease, 2 weeks after i passed my semester (thank god) they officially diagnosed me with MS. Your story hit me because it is so close to my story. I just wanted to reach out and tell you that reading your story and seeing that you were able to work as an RN and survive the diagnosis has given me hope. I read those lines about you worrying about having to quit school and about what your future was going to look like and i could have written those words myself. I never had any idea that this is what 25 was going to look like for me. Thank you for sharing your story. keep fighting the good fight!
Gaby, Oh my gosh! I’ve been hoping for years to find a reader in New Orleans.
I’m so happy you read my story. I continue to post on Tuesdays. I would be honored if you contact me at [email protected] No pressure!
I was diagnosed in March of 2012 with Neuro Myelitus Optica. It sounds exactly like MS except that its origin is different and it requires different treatment. I was diagnosed by Dr. Mangal Shah of Jackson MS. The diagnosis is freguently wrong. Please read about NMO and tell me what your differerence is. So far, I have been very fortunate. I keep worrying about when the other shoe will fall. Let me hear from you, Thanks.
Lois, I have to admit I’ve never heard of that one. I’ll look it up. FYI thanks for stopping by and know that I release new posts on Tuesdays.
great blog! I can relate to the mom cleaning thing I also feel guilty my kids having to go through this..as well as being unable to go to grand children’s ball games and such. I alienate loved ones then I cry when I’m alone ???????
Lisa, It never stops! I just finished a cleansing cry earlier today.
Thank you for creating this (your) blog. I thought I was the only one going through these sort of things. I cried when I read this blog especially the part where you said you were mourning your old self. That put in perspective for me. I read it aloud to my husband who is always near me or at within yelling distance. Thank you!!
Sophia,
Thanks for reading my story. Yes, I too cried as I wrote this one. I release new posts on Tuesdays. Thanks again for the read!
Nicole, I am so glad you commented on my blog so I could find and read yours!
Jammies, So nice. Now you got to come back!
Nicole
Jammies,
I just saw this comment! I’m so sorry it took me so long to reply! I do release new shorter posts on Tuesdays!
Delmar,Nevertheless thanks for the read!!
Nicole