Support: Friends and Family

Support. This post marks the first of many on the subject of support. I do not mean support from medications or medical equipment or lifestyle adjustments or physical therapy. I mean the support we need from other human beings who care about us. I know that many of you are struggling with this issue. I know this because that struggle is inherent in the process of adapting to life as a chronically ill person. I have found that some people cannot handle illness at all. Others struggle with the urge to fix it and make everything better when we, the sick people, know that that is so rarely an option. In fact, the pursuit of a cure will drive some people, significant others in particular, to utter madness until they come to terms with the fact that chronic means forever. Still others struggle with being at an absolute loss for how to be supportive. 

I am very, very lucky. I have an incredibly supportive family. I have a sister, my best friend and most favorite person, who is also dealing with a chronic illness and therefore understands my situation inside and out. I also have a mother who is by far one of the strongest and most giving people on this earth. She understands parts of my struggle because she suffered through a back injury that resulted in spinal surgery and a very long, painful recovery. During the months and years leading up to my diagnosis, my mother struggled with feelings of helplessness. She had to stand by and watch as her daughter deteriorated before her eyes and there was nothing she could do about it. After the diagnosis, she had clearly defined roles. She became a caregiver and my financial backer. She paid for all the expensive tests and treatments I needed. She also provided food, clothing and shelter to a daughter that should be out in the world like every other 20-something making it on her own. Then she saw me struggle through devastating pain. She watched me decline further and further into total disability. However, she still had those clearly defined roles to give her some guidance and control in such an impossible situation. Our relationship went from being very strained and tense to open and relaxed as we both settled into our newest roles of caregiver and the very, very ill. Now that she is the one who provides the most crucial help I need and I have let go of most of my pride and let her, our relationship has really improved. Now we are sometimes friends, sometimes mother and daughter, and sometimes caregiver and the infirm. 

I am also lucky to have such supportive friends. Not a single one of them has ever expressed exasperation or frustration with my illness. Each one offers their own unique support. My best friend, Alex, offers every kind of support there is. She will bring me coffee and watch movies with me if I cannot leave my house or am having a particularly tough time. She will talk on the phone for as long as it takes to work through an issue. She will check on me via text or email regularly. When we hang out, she gets up to get our order of coffee or lunch and brings it to the table for me or holds doors or helps me carry things. She will tell me she loves me or misses me. She is there for me all the time, every time, no matter what. She will distract me or help me focus my attention on the problem. She does whatever I need. Sometimes she knows what I need better than I do. When she doesn't know, she asks. I love her and feel so very lucky to have her. 

My other best girlfriend, Betsy, offers her own unique support. We are not in the habit of seeing each other very often. It comes in waves of talking or texting then weeks will go by before we hear from each other again. She knows what a private person I am and how daunting a task it can be to keep in touch with everyone on a regular basis. So, she gives me space so as not to overwhelm me and I appreciate it. When we see each other, we have so much fun. We laugh the whole time. But, we also talk seriously and she listens to me talk about whatever is troubling me. When we hang out, she cools down the car for me, drops me at the entrance of wherever we're going, holds doors and generally treats me like her girlfriend. She has a knack for anticipating my limitations and needs, sometimes well before I do. She is incredibly silly and the most verbally affectionate person I know. She achieves a rare balance of showing me she loves me and thinks the world of me but can give me as much space as I need. She is also one of the only people who can bring out my sillier side. I love her very much and need her particular kind of support. 

Then there is Josh. He's been a good friend of mine for a few years now and also my sister's boyfriend for at least half of that time. He is a person who never, ever thinks twice about getting up to get something I need or getting to a show early to make sure he can grab a seat for me or carrying things for me. He is always one step ahead of me and can quickly come up with ways to make just about anything easier. He sees all these things he does as a given, in part because they are so easy for him and make such a difference for me. Back before the diagnosis when the pain was out of control and I was struggling to work and go to school, he would sit and read my text books to me while I was lying in bed on ice packs. He would bring me dinner if I couldn't get out of bed and lend me 10 or 15 DVDs at a time to keep me occupied. He took on the role of caregiver from the start and has continued though that role has evolved significantly since then. 

Then there is my friend Dan who lives out in L.A., although we met while he was still living in Florida. We only started to really get to know each other well within the last year. He is one of the funniest, most clever people I know. He manages to makes me laugh no matter what I am going through, no matter how devastating it might be. Our friendship has developed over the phone. I have spent more hours on the phone with him than anyone else in my life, ever. And yet somehow, the time just flies by. He has become very important to me because our friendship has evolved from one of jokes and one-upmanship to one where I can talk to him about anything and he will worry with me through any problem. He shows so much concern for me and waits with me to see if things will improve. We talk all the time now. He has become one of the first people I want to tell any news to, good or bad. 

There are others, other friends who play smaller but incredibly important parts. Each friend brings something different to the table, each one offers their own unique kind of support. 

See what I mean? Lucky.