ARC.000 — Arché: Mälargården Rehabilitation Center.

I wrote this text as an open letter to the people who work at the center where I received rehabilitation. I only wanted three things: to thank them for what they did for me, to point out that questionnaires measure but do not explain, and to speak on behalf of the many who can no longer do so because the illness has taken away their voice or their strength. I never imagined it could be useful for anything else.

I would like to share some reflections that arose during my stay at this rehabilitation center. They are not intended to be a clinical assessment or a technical analysis of the treatments received. They are, simply, the sincere expression of how I experience the illness, what I have learned during these weeks, and the deep gratitude I feel toward the people who have accompanied me. I hope these words provide a complementary perspective to that of the usual questionnaires, scales, and measurements: a reminder that behind every result there is always a person, a story, and reasons to keep moving forward.

Numbers have a limit

Numbers are useful, but they have a limit. Two people can get the same score on a quiz and be living opposite realities. One may feel empty. The other, deeply alive.

Scales describe aspects of a life. They are not life itself. Because a life is also made up of reasons, connections, emotions, plans, fears, dreams, memories, losses, and hopes—elements that cannot be captured by any scale and yet are essential to understanding how a person truly lives.

Here I have seen it clearly. I have spent weeks with other people who also live with Parkinson's. Some are already friends. And in each one, the illness is experienced in a different way. There are repeating patterns—the tremor, rigidity, freezing, fatigue, fluctuation—but the way each person goes through them is always their own.

It changes the body. It changes the surrounding life. It changes what each person needs. Illness has a common name; the way it is experienced is always unique. And it deserves to be studied and treated as such.

My Reality

In my case, that reality is shaped by early-onset Parkinson's, insomnia, anxiety, and depression. They don't act independently: they are intertwined and feed off one another, creating an experience that doesn't fit into the boxes on a form.

There I was the youngest of the group. And this time I didn't find it funny. Despite maintaining an optimistic attitude and a firm will to move forward, I live daily with considerable uncertainty.

The fluctuations between being “on” and “off” mean I never know how I’ll feel a few hours from now. There are moments when I can exercise, think clearly, have conversations, participate, and feel connected to life. And there are other moments when my body, mind, and emotions seem to shut down all at once, as if someone were turning off the lights in the house, room by room.

Mornings are usually the hardest part of the day. I often wake up feeling anxious, sad, or in tears before the day has even begun, and there isn’t always a specific reason: sometimes it seems to be part of the very nature of the illness.

Little by little, the levodopa takes effect and restores my energy, motivation, and ability to take action. Then I start to recognize myself again. I regain the desire to move, to work out, and to make the most of my day.

Fatigue and Isolation

The afternoons bring another battle. A physical, mental, and cognitive fatigue sets in that is difficult to explain to anyone who hasn’t experienced it: thinking requires more effort, concentrating is harder, organizing tasks becomes more complicated, and simple decisions can become surprisingly difficult.

I often find myself procrastinating or avoiding important tasks. Not because I don't want to do them or because I don't care about them, but because the executive energy needed to tackle them is, temporarily, beyond my reach. From the outside, it may look like disorganization. From the inside, it feels like trying to run with the parking brake on.

I also notice in myself a tendency toward isolation. Not because I have stopped valuing people, but because living with the illness consumes an enormous part of my resources. Maintaining conversations, answering messages, organizing meetings, or simply being present demands an energy that is not always available, and thus, little by little, loneliness can become the involuntary consequence of managing a budget that is stretched too thin.

The emotional toll

And perhaps the heaviest burden is the emotional one. Having early-onset Parkinson’s means facing questions that most people my age don’t yet have to ask themselves. It means living with uncertainty about the future while my plans, dreams, and desire to live life to the fullest remain intact.

It also implies a particular form of grief. Parkinson's does not only modify movement: it alters the relationship with one's own identity. Sometimes grief does not consist of losing something entirely, but in no longer being able to take it for granted. There are abilities that still exist, but whose availability has become uncertain, present some days, hidden others. And living with that intermittency demands an emotional energy that rarely appears on clinical scales.

Illness also introduces a silent risk: we begin to be seen—and to see ourselves—primarily through the lens of our limitations. Little by little, conversations revolve around symptoms, treatments, difficulties, and losses. All of that is important. But there is a danger that the illness will take up so much space that it ends up overshadowing the person.

And a person is so much more than what happens to them. They still have desires, plans, emotional needs, aspirations, contradictions, a sense of humor, curiosity, and a desire to participate in life.

Perhaps one of the hardest aspects of living with a chronic illness is not the loss of specific abilities, but realizing that others begin to perceive you as someone who is more fragile, more dependent, and less capable of desiring and being desired. As if certain human needs were put on hold. As if the illness reduced the person to the status of a patient.

However, we still need to love and feel loved. We still need intimacy, friendship, recognition, and purpose. We still want to contribute, build projects, and be seen as fully-fledged adults—not just as recipients of care.

Disease changes many things. Humanity is not among them.

The Invisible

Many of the biggest challenges are invisible. There are mornings when something as seemingly simple as getting in the shower requires a considerable internal struggle. Sometimes I need to put on music—sometimes the Rocky soundtrack—to muster the courage to start the day. It may seem like a funny anecdote, and in part it is. But it also speaks to something deeper: actions that used to be automatic can now take an unexpected amount of emotional and mental energy.

Something similar happens with freezing. Few things scare me as much as getting stuck on the street, in a station, or at an airport, alone. It is a vulnerability that is hard to describe: the fear of not being able to move when I need to, of getting trapped in the middle of a crowd that might not understand what is happening.

Interestingly, that experience changes once I’m inside the center. Here, there’s a sense of calm, safety, and support that transforms my relationship with my symptoms. If something happens, I know I’m surrounded by professionals who understand exactly what’s going on, and that invisible support network alleviates much of my anxiety.

Perhaps that’s why the biggest challenge begins when you return home. In this environment, it’s easy to feel supported, understood, and safe. The real challenge is to carry that feeling—that sense of security, structure, and confidence—into real life, where fluctuations, uncertainty, and the need to figure many things out on your own return.

The Question That Changes Everything

All of this experience has led me to a reflection that has become central to me. Many health questionnaires try to answer one question: how are you. But the question that resonates within me is another: what do I want to be well for. And that difference changes everything.

Health is not an end. It is a means. I do not train to improve a score on a scale. I train to preserve my autonomy for as long as possible, to remain independent, so as not to become an unnecessary burden on my parents or my sister, and to be able to enjoy my nephews and nieces and my friends.

I work out to keep feeling useful: to contribute, to learn, to create, to help. And also—to be completely honest—to keep feeling like someone capable of arousing interest, affection, and desire.

Because illness affects the body, but it doesn't take away our most basic human needs: to love, to feel loved, to feel valued, to feel alive.

I don't train just to walk better or be stronger. I train because autonomy is part of my dignity. Because every capacity I retain allows me to continue making decisions about my own life and take my place in the world from a place of reciprocity, not just dependence.

I don't take care of my body to keep it intact. I take care of it so I can make the most of it.

The Energy Paradox

And here’s a paradox that’s becoming clearer to me every day: many of the things that bring the most life are also the ones that consume the most energy. Loving takes its toll. Creating takes its toll. Learning takes its toll. Training takes its toll. Helping takes its toll. Committing to other people takes its toll. And those are exactly the things that make the exhaustion worth it.

That’s why I’m less and less interested in the question of what gives me energy and what drains it. The question that matters to me is a different one: which activities generate more meaning than they consume. What makes the exhaustion worth the effort?.

From that perspective, energy is no longer something to protect and becomes something to invest in. I do not aspire to reach the end of my life with my reserves intact. I aspire to have spent them well: on loving, on learning, on training, on helping, on creating, on sharing, on building relationships and memories with the people I love.

Because a good life is not about protecting life's energy. It's about using energy to live it.

Accept the help

For a long time I thought that strength consisted in not needing help. Today I am beginning to understand something else: that there is also strength in accepting it. That autonomy does not mean doing everything alone, but rather being able to continue building a meaningful life by leaning on those who love us when it is needed.

Perhaps the most valuable lesson of this experience is precisely that: discovering that allowing oneself to be cared for does not diminish a person's dignity. It is also a part of it.

Humanity

I am taking away something much harder to measure than treatments: humanity. The dedication, the closeness, the respect, the professionalism, and the care with which I have been treated, in every conversation, in every session, in every gesture.

I also want to highlight the beauty of the surroundings. The plants, the spaces, and the tranquility of the place radiate life. There is something profoundly restorative about being surrounded by such a well-kept environment. It is not just a rehabilitation center: it is a place that fosters well-being, calm, and recovery. A truly special place. Almost idyllic.

The challenge now is not just to maintain the exercises or apply what I've learned. It is to try to reproduce out there a part of the attention, dedication, confidence, calmness, and humanity that I have found within these walls. If I manage to take a small part of all that with me, I will consider myself fortunate.

Thank you

Thank you for helping me not only think about how I am. Thank you for helping me think about why I want to be well. Because people don't just need measurements. We need reasons. And perhaps that is the most important thing I am taking away from here.

Symptoms matter. Scales matter. Treatments matter. But what keeps us going are reasons: the reasons to get up when the tears come, to train when the body protests, to push through the uncertainty of difficult days, to keep believing that life is worth living.

Because in the end we are not just what happens to us. We are also what we choose to keep fighting for.

It wasn't a goodbye

I wrote this text to give to the center on the day I left. Only much later did I understand that it wasn't a farewell. It was a beginning.

Everything that came after was born there, without my knowing it. On sleepless nights. At four in the morning, smoking in the woods, outside the facilities. At six, doing yoga on the lawn with fawns all around. At seven, hitting the punching bag with the hand that still responded.

None of those moments felt like theory.
All of them were.