A couple of weekends ago I attended my first ever “get together” with a bunch of fellow Marfs and their families from around the South Island. This group was organized through a Facebook support group which was started by Sue, an amazing Marf who has two children who are also Marflings.
I can’t really find the words to describe the feeling of having so many Marflings in one room (and when I mean so many I mean 8, but for the proportion of us in NZ that’s quite a few for one room!) Without having met any of them in person before, there was this unspoken understanding that was simply amazing.
It was also interesting to see the different symptoms of Marfan spread within the group. Some of us had pectus excavatuum (chest wall is concave) while some had pectus carinatum (pigeon chest). We all seemed to have the “tall gene” (aka long limbs or dolichostenomelia) and long fingers and toes (and the fancy word for that is arachnodactyly) — with me looking short standing at 177cms (and this is after I had my growth stopped at 16). Eye, bone, spine and heart symptoms were also present among the group. And although we all had a different set of symptoms, we had many shared experiences of awkward dislocations, previous surgeries, and were able to give advice to those awaiting further surgery.
Here is a picture of the Marfs at the get together:
I smiled to myself when I heard someone saying they needed to take a seat after standing up for too long… apart from my pregnant friends (and the oldies from church) I rarely hear this statement. As I said in my last post, I often feel a burden when around friends and family because I feel like I am complaining all the time. It’s like I always have a problem. Somewhere that is sore. But in this room filled with people I’d never met, I felt that we were all one, that we all just “got it” with no explanation needed. It was a “I need to sit down” not a “I need to sit down because I’ve been standing and my back hurts because etc…”
It’s not like other people don’t understand; but more understanding seems to come from more experience. For example, today I met a friend for lunch in the city center. As I parked in the disabled park with my permit, a man stared me down with a limp across the road. He continued to stare at me while it took me the 5 minutes to get myself together to get out of the car. When I came out with my crutches he looked embarrassed and walked the other way. The fact is most of the time I don’t use my crutches but I felt I had to prove that I was legitimately using the park. Another parking incident happened at the start of the year, where an Auckland Transport warden gave me a ticket for using my “Grandfather’s permit”. I was embarrassed about explaining my condition so I just gave up and got in my car. My friend tried to argue on my behalf but we didn’t get far. I felt if I had been using my wheelchair (which I do still use some days) it would have been a different story. This makes me annoyed, because I feel as if I am conforming to the image that the world sees as disabled. The reality is that it shouldn’t matter whether my illness is visible or not, I should have the confidence to use the park I have a right to use.
I may look “normal” on the outside (OK well not normal, but you get me) but this morning I struggled to get out of bed because I had so much back pain. This pain has caused vomiting every day for the past four years. It has caused me to miss out on many events such as weddings and travelling plans. And pain is something that we all have experienced, albeit in many different forms. Any sort of pain can create scenarios that you never imagined you’d have to deal with. Pain can be unbearable and, like this morning, can make us want to curl in a ball and not wake up. But like anything in life, if I look at pain in a positive way and acknowledge all it has taught me, I can be thankful for the lessons. Pain has taught me to appreciate the good days. To spend quality time with those I love. To not judge someone else by their seemingly “OK” appearance. And to love each moment of life as much as I can.
I still can’t explain how I felt last Sunday at the Marf meet-up. I know that many many people experience pain in lots of different ways, but I felt as if there was an unspoken shared experience of pain amongst the group. I felt as if I had known these other Marfs my whole life, and it was so reassuring to hear a “me too”. The meet-up has made me even more passionate and excited for my move back over to the UK. I aim to have a lot of involvement with the Marfan Excellence center in London, both as a patient and an employee. I am excited to see medical advances and watch how fast things in the medical world are moving. I firmly believe that the Marfan world will be positively influenced by research and I hope to be able to help make that difference in the Marfan field.
That’s all for now! I hope everyone is having a splendid week!