Joaquin Romero wanted to know the hard facts when he was first diagnosed more than 20 years ago. Multiple sclerosis is an incurable and progressive degenerative disease. He asked his doctor to explain exactly what to expect in future. “You will become quadriplegic, blind, mute and bed-ridden. But the worse is that it is incurable, and often what began as a physical illness could lead to depression.”
Presently, Joaquin is 41 and has almost lost the use of his left arm, his sight has deteriorated and is often short of breath. When he realized that he needed more help to fend for himself, he decided to start a company with his brother Borja to help disabled people like himself. He is an architectural technician and his brother an engineer, and together they have started B & J Adaptations, presently the only Spanish company in this field. Through his company, Joaquin has made his voice heard and has helped many people from “chair to chair”, as he says.
One day while playing football, I ran for the ball and kicked hard, and then I started to feel like there were ants all over my body; then came the double vision.
“A miracle and a caress from God”
“I was then 22 or 23 years old. I had my life perfectly planned: after military service, I’d studied technical architecture which was what I wanted as I had dreamed about directing constructions up in the scaffoldings. And I like football. One day while playing football with my friends, I sprinted for the ball and kicked hard, and then I started to feel like there were ants all over my body; then came the double vision.
When the neurologist told me the diagnosis, it was something I had heard of before. I just wanted them to prescribe the pills and settle everything.
I remember one client who came to me and told me he wanted to kill himself... I put myself in his situation and helped him to see that it was much more beautiful to live.
“No, no, Joaquin,” he said, “multiple sclerosis is incurable.”
“Okay, so I’d live with it,” I told him without any idea of what I was going to face.
“It is a progressive, degenerative disease. This is not going to be a sprint but a marathon. You will have to be well prepared, measure out your energy, not with great strides, but one step at a time.”
What did you do? What did you think?
I didn’t know what to think then; I couldn’t grasp what it all implied. I’m the type that likes to have everything under control, but this time, it was not going to be possible. Thank God I was already a member of Opus Dei for some years. There is always someone to confide in and talk about my problems. I talked and he listened. We would go for a drink by the sea – I love the sea – and with that excuse, I got to know all the bars along the coast of Barcelona...
Not everything gets resolved talking, but you become more objective. Often those with this disease get trapped with problems that can be solved. The doctor had been very clear because I wanted to know exactly what to expect. I'm sick, but not stupid. I would be quadriplegic, blind, mute and bed-ridden, but the worst would be the depression that the physical illness could provoke.
So you didn’t allow it to get you down?
I have only now begun to sense the great meaning that lies hidden behind this illness.
Of course not. And when I realised that I could no longer fend for myself, my brother Borja and I adapted the house so that I could control everything from either the chair or bed, or from the computer. That's how the company started in these 30 square meters. Today it is the only company in Spain that builds, adapts and fixes the lives of disabled people with similar problems. And the best part is that I can talk to my clients from chair to chair...
You must have seen a lot of suffering…
Once a lady called asking for help for her ailing husband. I said I would look into it. After some time, I called but she was not around, she had gone to the funeral of her husband... Since then I vowed not to waste a second of my life to help those who came to me. Sometimes a customer comes in for a machine and then before they go, they ask: “And how you holding up?”
What do you say? Can suffering be loved?
No; not for itself; no. Suffering makes no sense; you have to find the meaning behind it. I’m telling you the truth about what I feel and see. I reply that I'm going through one of the best moments of my life because I have only just begun to sense the great meaning that lies hidden behind this illness.
Suffering is a mystery, yes, and there is no handbook that says: number one, how to cope with suffering; number two, what to do when it lasts more than two weeks... How easy it would if we already knew what to do about it!
I think God has made us free so that we have a chance to discover its meaning for ourselves. That’s not very nice, you might think. I don’t think God lacks intelligence and intuition; we are the ones. We should ask ourselves why we can’t understand it, and I’ll encourage you to get closer to Him through the Sacraments…
When I get to heaven, I would get on my knees, because then I would be able to, and tell Him, “Incredible. It has been stupendous.”
And you have no complaints?
No. I can only say one thing: even though I haven’t studied theology and, as far as I know, there is yet any theological explanation about how to live joyfully with suffering... I can tell you that I have managed to do it. And I’m not joking.
In terms of health, I’ve lost everything. But one thing I have never lost is interior peace, and the sureness that the way I am facing all this really works. I do not remember ever having felt as good as I do now.
For me, it seems that my life is like a miracle, a caress from God. It may sound crazy, but no man would have enough imagination as to invent the complexities of what I’m going though; no, only God knows and is capable of it.
Have you ever had any moment of despair, a temptation to say “enough is enough”?
Sure, many times. There were moments when I thought God has abandoned me, and when I had hit rock bottom. I remember one client who said he wanted to commit suicide. I told him that I too had thought about it myself and even had a suicide plan carefully drawn out… it was easy! But then redirecting the conversation, I told him, “Don’t you think it is much more beautiful to be alive?”
Some people say that euthanasia is a solution
Who says so? The sick or those who have to put up with the sick? If you really love the sick, you cannot simply shut them out with your ‘solution’. That is unjust and selfish. They need to see that there are many options. You cannot settle such an important issue by simply saying: “Have a good death.” If you hear that someone has a solution to offer, you have to discover what it is. If you really love those who are sick, you have to do everything you possibly can to help...
What if the patient himself wants it?
Then I’d put myself in his place. We must talk face to face. I would tell him. “Don’t think you're a useless piece of junk, a leech... no. On the contrary, you have the opportunity to show that suffering can have great value. It's a mission.” It is important that people understand that a person with disability is not a useless person.
Did you discover all this overnight?
No, no! That would be the handbook I was talking about... At 15, none of these answers had even entered my head. These are thoughts that have become clearer over the years, and now I see clearly... but it has been more than 20 years! The Joaquin Romero now has nothing to do with that time. If you like, he is more radical... but with a heart that will not fit inside…
What would you say to God when you get to Heaven?
I’d say “thank you” and give him a kiss. Thanks and a big kiss for the life that he has given me. Besides I would not have wanted another life; I want what he has wanted. If I had a hat, I would remove him and salute him. I would get on my knees, because then I would be able to, and tell him, “Incredible. It has been stupendous.”