In less then 48 hours, I’ll be traveling back to my home country of the U.S. for an extended three month vacation.
I’ve been residing in South America for almost a decade now…and while I initially used to go to the states at least twice a year, it has now been a little over three years since my last visit…which means that I’m in for a bigger case of reverse-culture shock than I usually experience. (When you live in a place that is *completely* different from where you came, I think that it’s somewhat inevitable to have such feelings.)
Ranging from the obvious:
Do people really need to use their smartphones so much, or why does “new and improved” at the grocery store usually mean smaller? (If I’m feeling particularly courageous, I might even turn the package sideways and take a look at its ingredients list. Eek! My nephew once commented how he loved the chocolate milk that is sold at my local market because it had only three ingredients: milk, chocolate, and sugar.)
To the more subtle:
Every now and then, when I’m walking around a store in the U.S., I’ll hear a parent urgently telling their child (in what is supposed to be a muted whisper, but which usually ends up being louder than a yell) to STOP STARING. I always feel bad in such cases…not necessarily for myself, but for the little kid. I mean, I personally feel that my forearm crutches are quite cool…and to see a six-foot guy walking around with them is something that is going to attract the visual attention of little children. (Imagine how much attention I’d get if I started walking around with a cape!)
And a part of me, even though I understand that many of these parents base their words and actions on an idea of “politeness,” can’t help but think that the primary message that is being instilled in some of these children is one of “don’t look.”
For my graduate thesis at Harvard, I designed a museum for prosthetic devices. At that time, disability had not yet entered into my life, but there was a part of my who wanted to explore an architectural design that was based upon real accessibility, and not just having to comply with a checklist of requirements. There was also a part of me that saw not just modern, but also historical, prosthetic devices as something that were absolutely beautiful; things that were mean to be looked at, and not hidden. (And for the purposes of my project, I included artificial limbs, crutches, eyeglasses, hearing aids, and wheelchairs in my definition of prosthetic device.)
Apparently, though, not everyone agreed with my premise…including the architects who had been invited to review my final presentation. I still remember being told that what I was doing was “cynical,” that I was showing things that were supposed to be hidden. I still remember being so shocked by these comments, that I couldn’t even respond. I still remember feeling absolutely hurt, and taking it somewhat personally.
When disability permanently entered into my life less than a decade later, I often thought back to this moment, to my thesis project, and chuckled. Now I’m not going to say that it’s easy to incorporate a cane or a pair of crutches into one’s personal identity…but when it became absolutely necessary for me to do so, I told myself that I was *always* going to be proud of my crutches and of my canes. I would not allow them to get anywhere close to being marks of shame.
I know that “showing” a disability might not be for everyone, but for me personally, doing so makes a lost of sense. Maybe this is one of the reasons what I created the Show Us Your Hands! community collage project a few months ago, this belief that we should be proud of our hands and that we should show them to the world, no matter what they look like.
Because once we show, more people start to see. And the more people start to see, the more that begin to know.
My bags are packed, and I plan to rest as much as possible over the next two days before I take off on my 20+ hour trip. I’m a little nervous, no so much about the actual trip (which is going to be a challenge, but I just continue to remind myself that everything is going to be okay), but more so about that fact that my physical condition has changed drastically since I last saw many of the friends and family members who I will be visiting during this upcoming trip.
I can no longer hide what is happening to my body; I have to show what is going on. My friends and family will see…and together, we will all know, and we will all continue to hope that there comes a day in the future when those of us who live with these diseases no longer have to experience so much pain and so much disability.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Five months ago, RA Guy put out a call for submissions to a community collage showing the hands of people living with different kinds of inflammatory arthritis. “I knew I had tapped into something powerful when I saw my inbox completely full of photos,” RA Guy says. Many of the photos were accompanied by remarks like the above about how empowering it had been for the person to take the picture. “I felt that this deserved to be something more than just a one-time project, so I started thinking about people who I would enjoy working with. Lene’s name and Cathy’s name immediately came to mind.” At about the same time, I’d myself had a lightbulb moment while at the dentist and hurried home to write RA Guy an e-mail suggesting a collaboration. All three of us were already pretty overcommitted, but as RA Guy puts it, “when Lene sent me an email, I sort of figured that the three of us working together was meant to be.”
Mtunzini, North Coast of Kwazulu-Natal, South Africa
How long have you lived with RA?
What advice would you give to someone who has just been diagnosed with RA?
Seek honesty and hope — I was diagnosed at age 20 and the grave way my Rheumatologist approached the disease frightened me. It would take me weeks to recover mentally from one visit and I always came away from his rooms in floods of tears. We fear the unknown so I would advise that you speak to someone who can be honest about the nature of the disease but who can also give you the hope that you need. With early diagnosis and correct treatment you will have more hope than I did 30 years ago because the treatment of RA has improved enormously with many more options today.
Take responsibility for your own health — Only you know the details of your lifestyle – your stress levels, what you eat and drink etc. Your Immune System has failed and that is a good starting point. Direct whatever energy you have to learning how to strengthen your Immune System. It is tempting to ‘give up’ when you have pain. I encourage you to not lose sight of your general health. You may not be able to change the past but you can change what you put in your mouth today! In your own mind try and assess what went wrong and then gear your lifestyle around regaining what you have lost. RA has taught me to be a fighter – in the good sense of the word, of course!
Live in the present — An ongoing condition is difficult to deal with and I spent the first 7 years looking back and longing for my ‘old’ life. Victory came for me when I began to accept that my life had changed and I started living in the present rather than the past. In hindsight I can see clearly that the past 30 years have equipped me for God’s purpose for my life today. Nothing in life is wasted if we will look for the good in every circumstance and allow it to change us and grow us as people. No-one likes to suffer but when you read all the RA testimonies you will realize that fruit grows in the valleys and not on the mountaintops!
Do you use any mobility aids?
Currently: My best mobility aid is my husband’s hand when we walk! I use a pool noodle to help me exercise in the pool. In the past: After hip surgeries I used gutter crutches (pressure is on the forearm and not the hands) and I have used a raised loo seat. For a 6 month period I had no right hip joint and was wheelchair bound.
How has living with RA helped to improve your life?
I became a Christian at the time of my diagnosis and it was the best decision of my life. RA brought me to the point where I understood my need of God. For 20 years my life had revolved around my physical body. I had neglected my spirit and soul. As humans we are firstly spiritual beings who possess a soul (our mind, will and emotions) and we live in a body. When I asked Jesus Christ to be my Saviour a miracle happened – I became alive spiritually to God. I have a real relationship with God, Jesus and the Holy Spirit. For this reason alone RA has been my greatest blessing.
Do you have any visible signs of RA?
I have scars from 13 surgeries – bilateral knee synovectomies, wrist & knuckle replacements, left shoulder replacement, 8 hip surgeries (1 on the left and 7 on the right), I have an uneven gait which my Pilates instructor is working on – he says that he is getting me ready for the catwalk! Most of my toes have fused naturally and my two thumbs have dropped. For 20 years I have been unable to lift my left arm due to weak muscles but I am making great progress and have started to swim unaided for the first time in 32 years. My left arm does not straighten properly (I think it is because of muscle weakness)
Can you please describe some of your favorite coping strategies for living with RA?
Physically: I eliminate frustration in my home as much as possible. We buy furniture that is easy for me to sit in. A high bed is essential and a raised loo seat for times of knee & hip pain. I cannot use a broom so I have bought an automated sweeper that charges at a plugpoint. I use dusters with handles, scrubbing brush on the end of a broom handle, I am blessed to have a dishwasher, I use long-handled tongs almost every day – to pick up cat bowls, reach into cupboards, to clean up after puppies! I use large plastic containers to keep smaller items in on the lower shelves of my kitchen cupboards (like tupperware). It is easier to keep tidy and when I want something I just pull out the whole container. An electric toothbrush helps sore hands and gives a professional clean. I stand my hairdryer handle in a heavy vase if drying my hair is too painful. This frees my hands to use the brush. A TV in the bedroom is a great distraction when tired and sore. We buy cutlery with thick handles for easy grip. I drive an automatic car. I use a foot spa regularly. I hang most of the washing on hangers and small items like socks & undies I hang on a round plastic hanger with pegs before I take it out to the washline. I tumbledry washing that does not need ironing and fold immediately. A taller teapot is easier to pour when full than a shorter one. My coffee and tea cannisters have easy flip lids.
Mentally/Emotionally: I struggle with loneliness as I am alone every day of the week. It helps me to structure my day as I like routine: housework, breakfast, exercise, tea break, computer for emails, lunch, rest (1-2hrs, read often), laptop to do writing, watch tv during breaks, prepare dinner. We have a collection of funny dvd’s and loads of Andre Rieu dvd’s which always lift my spirits.
Spiritually: I have an ipod with Christian music and cycle on my stationary exercise bicycle for 3 songs. I use the time to worship God and I am not so aware of my legs going round and the time factor! I have e-sword on my laptop with many different versions of the Bible as well as a good collection of health and Christian books. I write ‘Dear Neighbour’ letters for two publications. Writing has given me tremendous purpose in life and fulfilment. Focussing on your spirit and soul puts the body in perspective. You see the ‘bigger picture’. The body after all is temporal.
Can you please describe your current medical (traditional and alternative) treatments?
I have been on methotrexate since 1986, currently on 7 x 2.5mg tablets once a week, folic acid on 5 days of the week, coxflam (flexocam 15mg is the generic) 1 tablet daily, 2.5mg cortisone daily (trying to cut down).
Pilates (not group, personal trainer using a Reformer bed) and Biokinetics every second week as we have to travel an hour. Icepacks (Cryogel) always in freezer – wrap in thin dishtowel and apply for 20 minutes three times a day to inflamed joints. It increases circulation to the joints. Electric Heat pad/ microwave wheatbag for sore muscles or just for comfort when sore. Daily pool exercises (Sept –April) using pool noodle and Poolates (pilates principles in the pool!) I use 1,2 & 4 kg weights three times a week, a high density foam balance board (my balance was very poor) and a Pilates ball for squats against the wall. I supplement daily: multivitamin/multimineral, omega 3, Caltrate plus (calcium), 500mg powdered vitamin c, glucoasimine (2 x 500g daily). Vitamin B Complex when tired or stressed.
Is there anything else about yourself that you would like to share?
RA has taught me to be reflective about my life. Without reflection one year just rolls into the next and life becomes a blur. Taking the time to assess my life from every aspect – health, marriage, spiritual growth, relationships – has brought a greater awareness and thankfulness to God for my life. For the past 5 years I have adopted the American tradition of Thanksgiving and it has become a highlight of my year. I have discovered that when you have a better understanding of what is happening in your own life that you are better able to help others. For the past 15 years I have become more outward looking and my greatest joy comes from being able to help someone else. It began with the writing of my book, Seeing the Unseen, in 2009 and my DVD/CD 10 Life Lessons the following year. I have two more books ‘cooking’ and this year I added an RA blog called RA God’s Way to my website www.soulbooks.co.za.
During every *major* flare, such as the one that I’ve been in for the past week, there come a point when–even though I don’t know how long it’s going to take for the flare to run its full course–I start telling myself how well I am doing. Yes, I know that my mind is ahead of my body, in terms of recovering from the damage of the past few days, and I know that my body is definitely still in a lot of pain (an understatement, if ever there was one)…but I have the feeling, that confidence, that no matter what the next few days might bring, I’ve more than likely–once again–gotten through the worst.
And on days like today, I really do (at least emotionally) feel good…and I’m convinced that this state of mind is going to help me pull through this flare just a little more quickly than I otherwise would.
Strangely optimistic words for someone who only 36 hours ago experienced pain of such severity, that he thought he was literally just going to keel over. And while such a thing obviously did not happen, I did have a stumble (not so much of a trip…it was more of a “my body just completely gave out” moment) that would have been much nastier had I not been standing right next to my bed at that moment.
I find myself in a really good mood at the moment, not only because I woke up with a feeling that today might be the day when I once again connected with a sense of good health, but also because two items early in my day confirmed that I was indeed correct in holding such thoughts.
First, even though I’m still in as much pain as I was yesterday, I’m not doing any worse…and it’s this second part that counts for right now…because I think we all know that during those moments when it feels like there is no way the pain can get any worse, it often does. Having gone through this cycle more than once over the past few days, it’s nice to wake up and feel like things are stabilizing a bit. This gives me the hope that things will indeed continue to get better in the coming days. It also gives me a much needed break, and allows me to finally catch my breath from the maddening downward spiral that is a flare.
The second reason why I’m feeling so good is because today I met a personal weight loss goal! I had originally given myself six weeks to lose 5 kilos (11 pounds). In the end, I only needed just under a month to do so. I certainly wasn’t majorly overweight, but I have definitely been carrying around a few extra pounds that were not helping any when my entire body was flaring, or even on more “average” days when I walk around with my crutches. My rheumatologist commented as much a month ago, during my last visit. I assured him that the next time he saw me, I would indeed be weighing less. And the timing of meeting my weight loss goal is extra-sweet because my next appoint with my rheumatologist is this afternoon!
So yes, I’m still in a major flare, but I’m already looking forward to the day when the pain and inflammation levels subside. My mind will continue to respect my body and what it continues to go through…but my mind will also do its best to gently try to guide my body back to a place of improved health.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!