Spotlight On Those Who Love Us: My Big Brother Josh

I've written before about my big brother Josh - remember this February post? After seeing me struggle this past year, he made the grand gesture of  tattooing the words "Stand Tall" on his forearm. "Stand Tall" is the slogan of the Spondylitis Association of America  and two words that are central to my life. Despite the pain and struggle of living with chronic illness, I must hold my head high, stay strong, and keep standing. Nothing could mean more than knowing that my brother is there for me; that he's in this with me. Whenever we're together, I see these words on his arm and it's a constant reminder that I'll never be standing alone.

As the years go by, our relationship has only grown stronger; he has morphed from my big brother into my best friend. After enduring my worst year yet, I'm more sure of that than ever. No matter how bad things got - no matter how intense the pain or deep the depression - Josh was there. 

Now allow me to present this special spotlight...

Who in your life is living or has lived with chronic illness? Please say a bit about the illness and when were they diagnosed? 

My sister, Maya Klauber  (you may have heard of her, shes kind of a big deal). Maya was diagnosed when she was 15 with  a severe form of arthritis called Spondyloarthropathy.

What is/was your relationship like?

The slash in your question is appropriate, because Maya and I have essentially had two entirely different relationships growing up.  Up around the time I graduated high school, we had the typical contentious sibling rivalry that I look back on with tremendous regret.  She was the “annoying little sister” with whom I was too cool to develop any kind of meaningful relationship.  Thankfully - mainly due to the fact that I matured from being a typical self-absorbed, self-conscious teenager - our relationship has done a complete 180 since I went away to college. I now see Maya for how she always has deserved to be seen; a truly special and caring person who I'm proud to consider my best friend. Our friendship seems to be getting stronger by the day.

Did your relationship change in any way following their diagnosis? Was your relationship affected by illness? If so, how?

Growing up, Maya always had many lingering and unexplained pains.  I'm ashamed to say I did not think much of it, as I was wrapped up in my own “problems” and Maya VERY rarely complained. Unfortunately, I'm not alone in this - she got virtually no sympathy or understanding from her teachers, friends, or even doctors. I was content to accept the doctor’s guess that a previous bout with Lyme Disease was the culprit. As an immature kid, it never even dawned on me that Maya’s inability to run far or excel at sports was to be attributed to anything more than her being non athletic or weak.  

By the time I understood the extent of her condition, we were well on our way to developing what is now a fantastic friendship.  I'm very grateful for this, as I'm now able to take an active role in her life. I can be by her side for everything she had to endure since her disease  has become unmanageable without pain medication.  Having seen how she suffered for years before finally finding a doctor who could offer a proper diagnosis, how she dealt with the frustration of daily pain and varying effectiveness of her medication, how she handled the countless side effects and illnesses that she gets from her medication, and most impressively how she has USED her condition to help others, amazes me. It's certainly fair to say that her illness has brought us closer together and has opened my eyes to how special she truly is. 

What is/was the most difficult part of coping with your loved one's illness?

Other than the obvious answer of feeling helpless as I watch Maya in pain, what I find hardest is my inability to PROPERLY empathize with what she is dealing with.  I can read all about Spondylitis, I can have her describe what she is feeling, but there is just no way that someone who does not face daily, intense chronic pain can properly appreciate what it's like to be in their shoes.  It's impossible not to feel guilty that I am healthy and she is not, knowing that I could have easily gotten the same gene that predisposed her to this disease. Obviously it's illogical, and it's a feeling that Maya would no doubt object to, but I think it's impossible for any healthy sibling to not have this underlying sense of guilt on a fairly consistent basis. 

What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?

I think it is very important not to dwell on the fact that the person has an illness or disability.  Just be supportive and be there to listen if they want to talk.  Constantly asking how that person is feeling, while well-intentioned, can very easily make them feel uncomfortable and could serve as a constant reminder that they are “different.”  You will never truly understand what that other person is going through , and they don't expect you to.  Along those same lines, I think it's very important to keep humor and laughter as a major part of any relationship. Its even more important for someone who faces chronic illness or pain.

If you could send one message to medical professionals around the world, what would it be?

Just because you don't know what's wrong with a patient does not mean that it's in their head, or that it's not serious. This is especially true for auto-immune diseases.  Be thorough in asking about symptoms, and keep an open mind!