I was moderating some comments on my youtube account the other day and found this comment:

And then I remembered an incident a while back when I googled myself. (I don’t do that often, but check once in a while if something comes up that I need to know about). And you may know that when you start typing things in google, it shows you a drop down of the most likely thing you might want to search on based on things that have already been searched on by other people.

It was then when I saw that ‘Tamara Laporte hands’ was 2nd on the drop down! Implying that people have been searching to see ‘what’s wrong with my hands’ MORE than any other search thing related to me. That was quite sad and difficult for me. It gave me a heavy sad pit in my stomach. Even though I totally understand. When someone looks ‘other’ than what you’re used to, it’s only natural to want to know what happened. Still it was sad & deflating for me then (it was 3 years or so ago) to see that that was the most searched item.

Anyhoo, as I came across the above comment yesterday I was reminded of the previous google search experience and typed my name into the search engine again to see what the ‘most searched’ combos were. Here is it:

The ‘tamara laporte & hands’ combo has dropped down to numero 5, but clearly, it’s still important to people to find out what the what is up with my hands, right? :)

So I’m writing this blog post to thoroughly explain, tell you my feels about it all and hope that next when someone searches: ‘tamara laporte hands’, google will lead them to his blog post. ;) Maybe I should create a wikipedia entry eh? ;)

PS. I’m pleased that the focus has shifted from my hands to my singing and other interesting things related to what I’ve been doing with my life. :-)

***

So, what is up indeedilydoo with Tam’s hands?

I have an illness called Rheumatoid Arthritis. It’s an auto-immune disease which means that my immune system sometimes gets confused and ‘attacks my body’. In my case: it attacks my joints more than anything else. I was first diagnosed when I was about 19 years old. Causes are speculative/ unclear.

Now being 39 years old (so I’ve had the disease for 20 years), I have joint damage in pretty much my entire body, but most visually obvious and prominent in my hands/ fingers. On my left hand, I have 2 fingers (the little finger and the ring finger) that are in a permanently ‘bent’ position, medically they call that ‘clawing’ which I think is a RIDICULOUS name for it. LOL. For everything else medical they give it complex and mysterious-sounding Latin names, but no that bit has to be called; CLAWING. lol. Oh well. Anyhoo, it means I can’t straighten those fingers. Which is a pain, but weirdly, I can type with them and use them in all sorts of ways. It’s amazing how the body/ brain adapts to what it has available to it. It will use the body to its maximum however way/ whatever way it can. You may have seen people with let’s say an arm/ hand or fingers missing and you can see them play piano or hold a fork with their limited limbs somehow and you’re like; what? how? The body and brain is AMAZING, that’s how. :) Anyhoo, I digress.

So, I have 2 clawed fingers and also, pretty much on both hands, the knuckles have been so ravished by the disease that the tendons that usually lean on top of the knuckles (keeping your fingers straight) have ‘fallen off’ the knuckles, meaning that my fingers are now leaning to the left on my right hand and to the right on my left hand. So my fingers don’t stay straight anymore either.

This makes for a pair of deformed/ distorted and odd looking hands indeed.

The thing about the hand/ fingers deforming is that it is a gradual process and you don’t notice it happening until it’s sort of happened. Weird eh? So it’s a slow slow thing over time, and all of a sudden, you go: huh? oh, I can’t move this finger very well anymore. It starts with a little stiffness at first, then it gets stiffer and then all of a sudden it’s stuck.

I can get surgery on my hands to correct the deformities BUT if they were to straighten the ‘clawed’ fingers, I would never be able to bend them. They are more functional while they are bent, less pretty perhaps, but I choose functional over pretty every single time (I’m not that vain, ha!). And I could have the tendon thing corrected but I’m super worried that it will impact on my art making. Because my body/ brain are so used to drawing & using my hands as they are now, I worry that if they ‘correct’ my fingers, I suddenly won’t be able to make art anymore  and or that recovery will take a long time, and well you guys will understand that I can’t take that risk, again: sure it’s nice if my hands look prettier, I don’t like the way they look, but risking less functionality/ no more or struggling with art making? There is no contest. I choose function and art making over ‘pretty’ any time, screw pretty :0).

Am I in pain? Do your hands hurt? No, most of the time they don’t, unless I have a flare up which is much rarer nowadays as I’m on pretty good medication now that has stabilised the illness (there is no cure btw). In the earlier stages of my life (early to mid-twenties) I experienced insanely bad pain. There was 1 year where I had to stop everything I did, couldn’t work, could hardly walk, couldn’t get in and out of the bath by myself, couldn’t even brush my own hair because literally every joint in my body was inflamed. I felt like a prisoner in my own body and would cry myself to ‘sleep’ every night. I put ‘sleep’ in inverted commas because the pain prevented me from being able to sleep too. It was awful. I wasn’t on the right medication then and was going through a really stressful period in my life which contributed to all of this. It was an awful year AND very enlightening on many many levels (a story for another time). But currently: I’m not in pain much, only once in a while when I get a flare up, but they too are manageable.

What about medication/ natural/ alternative approaches? I’m currently on methotrexate and steroids (which I’m trying to wean off of). Steroids are a pain but I had to go on them while pregnant and breastfeeding (had to go off the metho before and during pregnancy/ breastfeeding as it’s a highly toxic drug). I treated myself homeopathically/ spiritually/ emotionally/ dietary for about 3 years (stuff I’ve done and tried: changed pretty much my entire diet triggering anorexia (story for another time), I have cut out and experimented with reducing: starch/ meat/ dairy/ gluten/ sugar/ preservatives/ food additives/ tomatoes/ night shade family veg/ food colourings/ artificial sugars etc etc, I have visualised myself healthy for 20 minutes every morning and evening for 3 years, reaffirmed my positive affirmations twice a day 5 times for 3 years long, followed ALL of Louise Hay and Carolyn Myss’ instructions,  I’ve been in therapy my entire life to work on unresolved emotional stuff, saw a hypnotherapist, I have bathed with quartz crystals by the moonlight (seriously, not being sarcastic), took a wide range of supplements: glucosamine, shark cartilage (yeah you read that right), cod liver oil, primrose oil, multi vits, calcium, vitamin d/ honey & vinegar concoctions, homeopathic drops etc etc, I have seen psychics and a woman who worked with a pendulum to get answers from my body etc etc and on and on. All those helped me somewhat and taught me GREAT things, it helped improve my recovery by about 50% but not enough to live pain-, hassle- and joint-damage free. So I now also use toxic traditional medicine which have truly helped me live mostly pain-free and I can function again. I’m pro considering traditional and alternative medicine: do what is right for you. We all have different bodies and chemistries, what works for one person doesn’t for another. Do your own research and do what works for you.

(A gentle request to please not leave me advice on new meds/ different medication/ different approaches/ diet/ that it’s all gluten’s or milks fault or that I don’t meditate enough, I’ve been round this loop a million times for 20 years, I know it all by now, thank you though).

Am I bothered by how my hands look? Yes. I would much rather have pretty – looking hands or at least: normal looking hands, so that it doesn’t shock other people AND ME. You won’t believe that it still throws me off when I see my own hands in a photo or in the mirror. I’m used to how they look on camera as I see that so often and I don’t mind how they look there, but I don’t see them from other angles that much. I only see them from ‘above’ unless I look in the mirror or see them in a photo and when I do see them in a photo or in the mirror: it shocks me still every time. I think a part of my brain is still expecting  to see ‘normal looking hands’. So this is really NOT fun for me. But I’ve been learning to live with it all for the last 10 years or so (the deformities have only really been obvious for that long). And like I said above, correcting the hands to look prettier has risks and side-impacts I’m not willing to take! For a long time (and I still do sometimes) I used to wear ‘fingerless gloves’ while doing my lessons or while being on camera, this to ‘hide’ the deformities, but over the past years I mostly can’t be bothered because they make me hot and bothered. haha. I get it’s confusing sometimes for people to see my hands, but I also think it’s inspiring to see that hands like that, can still make pretty nice art! :)

Are there things I can’t do because of my hands/ RA? Yes, this is actually really painful for me: I used to play the piano and the guitar. I can sort of still play the piano but in a much more limited way, my wrists are also affected, so it really limits my piano playing to simple chords and I can no longer play the guitar at all as I don’t have the strength for the grasp nor the mobility to move my fingers around properly for that kind of playing. This I’ve had to mourn and grieve deeply for years. I wasn’t a good guitar player at all, but I loved/ love it and miss it. :( I also used to be quite sporty as a kid and use to love doing cartwheels and hand stands. Can’t do any of that now anymore either. When it comes to these things however, I’ve come to look on the bright side and look at the things I can still do, like: painting, drawing, making art, play basketball, hold up my kids, point at beautiful birds, scratch my head (ha ha), hold up a cup of tea etc etc. There are a million things I can do in spite of my deformed hands.

The RA also generally causes me to be more tired more quickly than the average person and I can’t really walk for much longer than an hour or so or my knees/ hips can start to hurt quite badly. My body also needs more time to regenerate/ heal at night than the average person, so I need 10 hours of sleep rather than 8-9. (Not that I ever listen to the need for sleep, I barely sleep 7/8 hrs each night because: ART, LIFE, KIDS, LIFE, YAY, PUPPIES, but then after about a week I crash and need to sleep like 12/14 hrs. lol).

Why don’t you hear me talk about the RA more often? It’s simply not a big part of my life that I feel needs much emphasis. I’m not in denial or anything, but I don’t see it as ‘part of my identity’ either or something. It’s just there, it’s something I need to live with while I get on with life. It’s taught me a lot, that’s good, it’s caused me a lot of pain and sadness too and I have learned to process that too. But it’s not that I wake up every morning thinking: I’m Tam, I am a woman with RA. I’m just Tam in all my glory and there are many aspect to me. RA is only a small aspect though it’s a visually obvious one. I’m also lucky that I am not in chronic pain all the time. I know people who have RA who are not as lucky as me and are in chronic pain all the time. The illness is much more overwhelming and ‘in your face’ that way and if that was the case for me, I think you’d hear me talk about it a lot more often. My heart goes out to anyone in constant chronic pain. It’s one of the hardest things ever.

I know that it inspires people sometimes that in spite of having RA, and in spite of having deformed hands I still am ok doing my job. My job (of all jobs) is to have mostly my hands on camera all the time making art (lol talk about ‘confronting’!). Some people call it brave and they are impressed and they send me msgs telling me how brave I am and I love that and feel super grateful that I inspire people. And I also think that really it should not be considered brave or impressive, but it should be normal to see people of all abilities/ looks represented everywhere. The fact that people think it’s brave, means that there is a message ‘out there’ that it’s not ok to show yourself if you are not “perfect” or if you don’t look like ‘the norm’ and I’m NOT down with that msg. I’ve been brainwashed to think that too, of course, we are all conditioned to think we need to be perfect and pretty and nice and neat and normal and whatever, but I will not be defeated or bow down to that message/ brainwashing/ conditioning. I’m not on board with that one at all.  I’m pro-diversity and shining one’s light no matter ‘the package’. And I feel pretty goddarn passionate about that.

This is how I think: ok so I have limitations and certain things in my life make some things harder for me, but I just want to do what I want to do and if people are shocked/ confused/ bothered/ impressed or inspired is all part of life and I think I help make people think and change the status quo. People with disabilities (not that I consider myself disabled per se ) or people that don’t look like the norm or act like the norm are often sort of overlooked or ignored or seen as ‘not relevant/ not mattering’ and I’m here to go: screw that, you CAN run a successful business, be inspiring and uplifting. You CAN be a great big light for people and provide life-enriching content and BE SEEN by the world while not looking or being like the norm and experiencing your own physical or mental challenges. You absolutely completely totally irrevocably can.

Don’t let the societal ‘norms’ stop you from being you, shining your beautiful awesome light, pursuing your dreams and be the inspiring being you are. Do what you want to do. Create, love, live, shine!

So, if you came here after you searched: ‘Tamara Laporte hands’ on google, I hope you got the answers you were looking for. :)

Now, if I may introduce you to other many more interesting things about me:

I sing.

I have awesome kids.

I teach fabulous art classes.

I like making uplifting things for you.

I designed and sell my own stencils.

I have cool arty friends that teach on my year long course Life Book 2016.

I love cheese.

I have dreadlocks.

I interviewed Byron Katie.

I run a self-love series on youtube.

PS. Famous painter/ master Renoir (Pierre-Auguste) had RA too. In that time medication was limited or not available, his hands were deeply deeply deformed. This is rare footage of him painting. You can see how badly affected his hands are. Look at him, still painting like nothing is up, amazing, shows you how disability does not have to stop you:

Tilla Durieux by Renoir – Painted 5 years before his death

From wikipedia:

“Around 1892, Renoir developed rheumatoid arthritis. In 1907, he moved to the warmer climate of “Les Collettes,” a farm at Cagnes-sur-Mer, close to the Mediterranean coast.^[13] Renoir painted during the last twenty years of his life even after his arthritis severely limited his mobility. He developed progressive deformities in his hands and ankylosis of his right shoulder, requiring him to change his painting technique. It has often been reported that in the advanced stages of his arthritis, he painted by having a brush strapped to his paralyzed fingers,^[14] but this is erroneous; Renoir remained able to grasp a brush, although he required an assistant to place it in his hand.^[15] The wrapping of his hands with bandages, apparent in late photographs of the artist, served to prevent skin irritation.^[15]

In 1919, Renoir visited the Louvre to see his paintings hanging with those of the old masters. During this period, he created sculptures by cooperating with a young artist, Richard Guino, who worked the clay. Due to his limited joint mobility, Renoir also used a moving canvas, or picture roll, to facilitate painting large works.^[15]

Renoir’s portrait of Austrian actress Tilla Durieux (1914) contains playful flecks of vibrant color on her shawl that offset the classical pose of the actress and highlight Renoir’s skill just five years before his death.

Renoir died in the village of Cagnes-sur-Mer, Provence-Alpes-Côte d’Azur, on 3 December 1919.”

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