Filipe: a dialysis patient and world traveller
Isn’t life a wonderful thing? I’d like to start in this way, because I feel like I’m a very lucky person.
I’m writing to you from a wonderful and calm place. I’m at the Dead Sea, in Israel, with a view of the mountains in Jordan. Everything is silent and peaceful here and it is under the spell of this feeling that I’d like to tell you more about my adventure. I want to tell you about how a renal patient can have a fulfilling life.
I have very clear memories of the day when I started dialysis. It was April 19 2017. I went to the surgery room to get a catheter placed and, right after that, I was started on dialysis. It was a three-hour treatment. I didn’t talk a lot about it at the time, because I was in denial. It wasn’t easy to accept and I remember calling friends and family to see if anyone had a blood type compatible with mine. No suitable donor materialized.
Ten days later, my son Guilherme was born. The greatest love of my life was there, in my arms, weighing in at a little more than 3 kg. I remember thinking: Now, I choose to live for you.
Those were the ten days that I needed to understand what I needed to understand: Everything. How everything worked. And I started getting interested in the disease and the dialysis process itself. That was the moment at which I decided that the disease wouldn’t be stronger than me, and that’s why I want to share with you the four steps I have taken to get where I am today: happier than ever, and living my lifelong dream.
Step one – Eliminating attitudes that aren’t good for us
My medical report claimed that I had an incapacity of 71.4%. My body was so tired after treatments that I’d spend the next day sleeping or resting. I found myself looking in the mirror and feeling sorry for myself. I was only 28 years old and expecting a future of never working again, spending all my time hooked up to a machine.
Our first thought is often: How will others see me now? These are the words that our brains process and that make us complain about everything with everyone around us. These are the words that, in an instant, make us believe that nobody will ever love us. In that moment, we lose a grip on the true value we have. This is where I feel the first battle takes place: eliminating the attitudes that aren’t good for us. Starting to understand the disease and the treatment was very important for me, in order to mentally digest the fact that this process, the treatment, is what allowed me to stay alive.
We can only be truly happy when we understand that dialysis isn’t something bad. On the contrary, we are fortunate that these treatments exist, which allow us to continue our lives with those we love and keep on doing the things we enjoy. Once we have realised that, we can take the next step. Now, I am more thankful for all the good things in my life and I have stopped wasting my time complaining and whining.
Step two – Recognizing our capabilities
What am I good at? What do I really love doing? I’d opened a tourism company in February 2017, and, for the first time in my life, became self-employed. It was never anything I’d planned, but just something that happened. I’d invested a lot of money in order to pursue something I really enjoyed doing.
“But if I am tired after each dialysis treatment, will I be able to work at all?” The fears for the future made me place high demands on myself. I was demanding more than was possible for me to do. I have to tell you: I lived in a state of constant dissatisfaction because I wasn’t able to achieve the goals I’d set for myself. It wasn’t an easy process, but I started to understand that the simplest way forward would be to set clear and achievable objectives.
First, I tried to understand what my qualities were, as a professional. Then, I accepted that days would come when I would be frustrated. I learned to lower my expectations when I knew, upfront, that it would be harder for me to achieve my goals. From that moment on, everything changed. I decided that the days when I had dialysis would be my days off, and that the days without treatment would be my “best” days, when I would need to work twice as hard to compensate for the days I “lost” resting. This made me feel pumped with energy. I went to work with a sense of purpose, approaching my potential customers with a reinvigorated spirit. The result: sales soared. The goals I’d set for my company’s success started to come to fruition and everything went much better.
Allowing ourselves to adapt to reality is extremely important, in order for us to live lives in which we are happy and capable of dealing with whatever the day throws at us.
Step three – Staying focused on the present
Many of us plan for the future. This is normal and reasonable to do. However, we mustn’t forget that our lives are happening now.We should look at plans we have set, with fresh eyes, in order not to fall into the trap of failure. That can lead us, once more, into denial. Staying focused on the present makes each second of each day count and thus we avoid wasting hours (and days) annoyed with ourselves and with those around us we stay focused in the present, and remember that life is happening now, we will savour each victory when we achieve a goal that we had set. As a consequence, we’ll feel happier. Thinking “I’m good at what I do” gives a sense of wellbeing and of love, even in the simplest actions of our day-to-day life.
Step four – Accepting oneself, failing, learning from one’s mistakes and always being grateful
Self-acceptance lets us see how we can start afresh. This is what dialysis is: a restart. Life has to be altered to include the thing that allows us to keep on living. Getting rid of the feeling of inferiority that comes from comparing ourselves with people who don’t have to go through the same things we do and don’t “have to spend time hooked up to a machine” is one step toward treating ourselves better. Doing so can have a massive impact - whether at work, with our family, or in everyday situations like driving a car in busy traffic. Since the time in treatment takes up some of our free time, we have to grasp the time when we are not in treatment and live at 200% intensity!
To live is to make mistakes, but also to improve through them. We should all make the most of our limitations, in order to become better people and to inspire other people through setting an example. This is better than thinking we have the right to complain about everything around us, just because we may feel that we are worth less than others. We aren’t!
Being grateful is the best feeling anyone can have. For the simple things, as well as for the things that were hard to get and which required us to fight. By being grateful, we are telling ourselves: I’m a winner and this disease won’t be the main character in my life.
This is how I feel now: I am a winner. Do you want to be a winner too?