There are many kinds of friendship. College friends, sports friends, friends for party, friends with shared hobbies, motherhood friends, friends to have good conversations with… and so on. With some people you stay more in contact than others and there are friends that come and go. But in the end, how many friends will be there for you when your life makes a drastic turn, for instance after a diagnosis like Multiple Sclerosis? Overall, not something to worry about, right? Quite easy to say… but, sadly but true, eventually there might be friends who decide to leave your life. Good to know; I discovered new friendships are possible too!
Since the diagnosis of MS, I am active in online support groups for additional information and to stay informed about (medical) developments. Knowledge is power and personally it gives me a good feeling that I can be prepared to discuss my treatment with my neurologist.
It is January 2015 and in the online MS group suddenly a picture passes by. It’s a young girl, recently became a mother, but she also just had a new MS flare. It doesn’t go well with her. At the time she is facing similar medical choices like me so I try to support her and share knowledge. No idea what it was… The photographs, texts, the overall recognition? Anyway, there was an immediate click. At the moment, I’m very pregnant, but also physically in a very bad shape. We have a lot of support to each other, it just feels familiar. When texts pass by, the resemblances between us appear the be quite bizarre. We are around the same age, both a mother of a young child, we share same interests and had the same education. We also live quite nearby to each other, but unfortunately we also share the MS diagnosis. Every now and then we keep in contact by text messaging. I feel understood and we can exchange tips and opinions. Also a plus; we both have lack of energy, so it is convenient that we are familiar with all the MS terms so that texting is quite efficient. Basically, it takes half a word to understand each other.
Only a few people were aware of the planned date of birth, and she was one of them. Even though planned it still took 2 days before the baby was born. Since it was a long wait of 2 days in the hospital, between the waiting and watching Netflix it was nice to have a friend to text with and that her cheerful messages came along. I had a healthy dose of stress, because in the end this 2nd delivery was going to be scary and also exciting. This time I have MS and I have partially paralyzed legs, but it is still planned to do a natural birth with the help of the medics. And then there are these nice talks, actually with a stranger, but also with someone who feels and understands everything flawlessly and who also had a child birth with MS. It made those hospital days a bit easier and it was also that time (after being in contact for 3 months) that we decided to become Facebook ‘friends’ so we could see more photos and personal messages from each other.
Setting a date is difficult
After the delivery, everything went quite well! In hindsight, this was because of the three-day infusion of immunoglobulin immediately after delivery. For some period it gave me a nice ‘boost’, which was convenient for the postpartum period, but at some point, my MS symptoms went worse again. I ended up in the hospital and lost my mobility again. For my friend, mobility also remains a key problem so we are both very busy to keep a grip on our daily routines. In the end, we did not manage to find a moment where we both felt physically well enough to meet each other. Weeks and months went by and just when I was feeling better, she went with her husband and child for half a year to South Africa. They went with a baby of just one year old, with stroller and wheelchair on the plane. Jeez that was admirable to me… what a positivity and courage! The pictures that come by are so beautiful. We keep in touch and sometimes she explains her daily routines over there, but “between the lines” I know how hard it all must be for her. And then a message passes by: “In about two weeks we are coming home, so we can finally meet!” The half year went by and my baby daughter is turning 10 months. Luckily, in the meantime the medication has started to work for me. The tingling in my feet and weaker legs will be permanent, but I’m out of the wheelchair, I can walk again and I even got my drivers license back 🙂 Yes, the timing is much better this time and now finally we can schedule a time to meet… I thought.
It all went wrong again
She’s not even 3 weeks back on Dutch soil and a message is popping up on my phone. It all went wrong again. She has a new MS relapse and even collapsed to the ground when her legs failed to function. I am very shocked and we have a lot of contact. She is hospitalized for 2 weeks and informs me that she is not allowed to go home and has to go to the rehabilitation center for the time being. A wave of emotions and many recognitions get to me. About a year earlier I had experienced the same situations; I was also hospitalized, even had to start Tysabri medication during pregnancy and also felt the same heartbreaking feeling when you’re little toddler must be left at home and you can not take care of yourself anymore or even take a shower on your own. Day by day, improving messages are coming in; she can walk for 10 meters, do bike exercises and agility with the wheelchair and so on.
I want to visit her. Now. Oh, and how annoying MS is! It is quite absurd that we try to meet each other and every time there is something in our way. My physical capabilities seriously differ from day to day. There are days I can function, move and walk fairly normal… and then I snap my fingers and instantly I start to walk very difficult and I am obliged to stay in bed with extreme fatigue and lots of other symptoms. But a promise is a promise, I’m going to visit her! In about a week my baby girl is turning one year old so it also means that it is a year ago that we decided to become Facebook friends and get to know a lot more from each other. I get in the car and am going to meet her in person for the very first time. Via the window of the ‘restaurant’ of the rehabilitation center she already waves at me. I walk over to her and give her a big hug.
“Hi girl, nice to finally meet you” 😊